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 A Boost needed from my lbd sisters 
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Good? Evening,
My computer has been in the shop for a few days and I'm catching up on all the posts. Tomorrow is the last day for Frank's Exelon patch, the Dr couldn't see that it was doing anything. I'm a bit nervous as to what will happen, guess we'll see. He is hallucinating more and more, seldom can get the words out to let me know what he wants. He has accused me of running around for the last couple years but is doing that more these days but with vulgar comments. We've never had that kind of talk in our house and Frank would even cringe if the word sex was used. I know it's not him but it still hurts. After his accusations he wants to be intimate, I have a lot of trouble switching gears. I think these are two different men. It's a shame that I can't embrace this time but it's tough.

Lori, I know how you feel, I don't get mad or yell at Frank because he just doesn't get it. I know he picks up on my impatience in my voice. It's like having a toddler, dressing, changing a couple times a day, getting up from your meal to mop up, fill the fork or spoon, washing hands after they eat, on and on it goes. I find standing there 2-3 mins. while he tries to find the necessary words is very time consuming, and then the words don't make a bit of sense.

Well I've babbled enough, my daughter said "just get mad at him and tell him to knock it off." She doesn't get it either, although she's a hugh support for both of us.

Take Care, Gerry

Sat Aug 22, 2009 9:28 pm

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Gerry --
Talk to his doctor about some meds to knock back the aggression -- some klonazepam or something, maybe? So sorry you have to deal with all the ugly things Dr. Jekyll is hurling your way.

Renata (and Jerome-in-Heaven)

Sat Aug 22, 2009 10:03 pm

Joined: Tue Jun 09, 2009 11:11 pm
Posts: 117
Location: Tucson AZ
Thank you everyone for being so UNDERSTANDING during this ugliness of our lives. Thank you for your words of wisdom and care. I do have wonderful friends around and I do get respite every week but I really want to go away for more than a few hours but don't see how that is possible yet. When he gets a little more out of it, maybe then. In the mean time I'll push on and draw on strength for God, you, family and friends. Wish I had family here to help and his kids are so distant that isn't going happen. Love and thanks to all. I'm sure I"ll post again!

Sat Aug 22, 2009 10:54 pm

Joined: Mon May 04, 2009 11:49 am
Posts: 18
Location: Ontario, Canada
Hello All,
It's been a while since I have posted a message. While I haven't had to deal with bathroom issues in a public place as yet, I'm still trying to cope with the fact that I am having to do this for my mother. Sometimes I feel embarrassed for myself, if that makes any sense at all. About the gag reflex,a friend who used to work in a nursing home gave me a tip. Keep a tube or jar of Vicks Vapo Rub around and dab a little under your nose. It's a great way to mask the odor. You'll be smelling menthol instead of the alternative. God Bless each and every one of you.


Mon Aug 24, 2009 10:42 pm

Joined: Tue Jun 09, 2009 11:11 pm
Posts: 117
Location: Tucson AZ
Gerry- just knowing other people understand and get what we're talking about instead of looking like we came from the moon when we share certain things. I totally understand what you mean. Hurrah for you for not getting mad. I guess I need to work on this area more although I've come a ways! Yeah!

Tue Aug 25, 2009 12:16 am

Joined: Wed Sep 24, 2008 11:05 pm
Posts: 22
Location: Georgia
Post Nursing Homes and caregiving
Mom was not able to walk after her hip operation, and not able to follow directions from physical therapist. I have herniated disc, but even my friend who was very strong was not able to lift Mom. It's amazing how heavy a person is when they can't hold any of their weight.
Here's some of the things the nursing home situation changed for me. I became her advocate, and therefore the good guy. At home I had been the bad guy. I tried to get Mom to sit on the pads I put on her favorite chair and she would take them off and pee in the chair (through her diapers). She wouldn't change her diaper even if it showed yellow, because she said she wasn't wet. And I could go on and on. Everything was a struggle. She thought someone was there one night and turned every light on and it was hard getting her to get back in bed. She didn't want to go to bed when I did, but I didn't want her to be up when I wasn't. We used a baby monitor. One time I caught her letting my then 3 year old granddaughter hold Mom's blood pressure pill. After that I couldn't leave her in a room with the kids, and my visits from them consisted of keeping them safe from her.
At the nursing home while Mom was explaining why she didn't need changed they already had her changed. Same thing with going to bed (although twice they called me). The first nursing home was bad, but the next one had a caring staff, and was incredibly clean. Except right after the evening meal there really wasn't the smell of poop and pee...I think they all went after they ate! She got interested in the other people in her own way. She would shake one's hand in encouragement or nod to another. She would check on her favorites to see how they were doing. She got along best with the ones with severe dementia. The ones who were more or less in their right mind would try to talk to her (perhaps out of kindness to me) but they would tire quickly because Mom didn't make sense.
I could still do things for her, like clip her toenails, massage her legs, bring her McDonald's hot fudge sundaes (her favorite), I stood in the shower one time because she was having a new worker shower her, and she wanted me to be in there too. (Boy was that a hot experience). The grandkids and I made a scrapbook for her. Sometimes I redid her hair the way she liked it. We played cards (you can imagine). I also advocated for her i.e. don't put grease in her hair because her hair is fine and she will just looked like a wet weasel, don't put ice in her water--she doesn't like ice water, go back to the old soap--the new one is making her itch, yes she likes mens shirts--so put them on her--it's what she likes not what you like, and so on.
At the end I held her hand.
I am so sad to read of ManyMoons loss of her dear LO. I know the saying at the bottom of your posts MM by heart. It still gives me comfort. I too like to stick around you dear people. I post on a grief site, but there is something about LB families, so bright, so caring. At first MM I didn't know what to do with myself. I had built my whole day around my visits to Mom. I still go to visit my favorites too. I have more time to give them when I'm there now because I don't have to divide it with Mom. I miss her so much. The last two weeks she went down fast. Had kidney failure and internal bleeding. Hospice kept her pain free. She just stopped breathing.
She doesn't have to where she is. And she gets around great now.
Love to all

LBD mom to daughter: "We've been through worse than this. It'll be all right."

Tue Aug 25, 2009 1:22 am

Joined: Sat Feb 28, 2009 8:48 am
Posts: 5
Location: United States
I do very little posting but all your posts fill a very big need in my life and help me tremendously as we struggle along this unwanted path of life.

Frank has been in hospice care here in our home for nearly a year after being diagnosed at Mayo's five years ago. It has seemed to me that his symptoms of PD/LBD have progressed like some huge wave undulating up and down but rolling inevitibly onto shore to swamp us completely. We have gone through all the stages you are speaking of and each stage seemed so difficult I've thought "I can't continue". These past few months I've hired private care to come in for 2 hours in the morning and 2 hours in the evening. This gives me a few hours to rest and regroup. Plus hospice has been fantastic and caring and gives me 2 hours early mornings plus a volunteer twice weekly for two hours. I couldn't make it without them all.

Now we're entering the final stage of being totally bed-bound with Ensure, baby foods, catheters, fecal incontinence, diminishing urine output etc. etc. etc. The hospice RN guesstimates another month of this hell but says no one can be sure of our LOs will, strength or wish to remain with us.

My personal mantra has been this. You hold tight to the happy memories of your past shared life and the great love you had and have for each other. You take it one day at a time and forgive yourself for your failings. You're doing the very best you can. When he "mouths" I love you.....that is everything.

God bless us all and all our loved ones.


Tue Aug 25, 2009 10:55 am

Joined: Fri May 11, 2007 12:54 pm
Posts: 115
To All,

Each and every one of you deserve the highest honors for the loving care that you all provide your loved ones. You are all amazing! Don't ever feel guilty if you have to place your loved ones in a different living situation. You do as much as you possibly can and when you can't physically do anymore, you all find the strength to make sure that your loved one is still cared for whether it is with help in your home or placement in a caring facility. You are all doing such a great job in an extremely difficult situation. It's been a year since my mother-in-law passed and I have to agree with one of the previous posts that I too still find comfort reading this site. I think it is because the caregivers here truly understand how taking care of someone with Lewy Body changes you. Sometimes good, sometimes bad. Thank you all for your compassion, strength, knowledge, understanding, but most of all for your humor. Never give up and please don't ever stop posting.

Joyce K

Wed Aug 26, 2009 5:20 pm

Joined: Mon Apr 28, 2008 9:12 pm
Posts: 40
:( This thread has been useful for me tonight. I just spent the day in an emergency ward to have them do the appropriate medical tests for my hubby so that he can be admitted to the psych hospital in Delaware. He has run away and has been mildly physically abusive. The police have been here. My sweet young caregiver stuck with me all day because my husband has decided that I'm the enemy. Finally at 7PM the ambulance took him off to the psychiactric center. My caregiver and I stood in the parking lot crying. I'm trying to wind on down right now. The house is empty and he may never be here again. We built this house together five years ago and most recently he said that he "wants to go home"
Tomorrow, I go down to deal with the paperwork. Will he let me comfort him there? I don't know. If they get him stabilized, I have a bed for him in a wonderful dementia unit. Just typing all this has helped.

Fri Aug 28, 2009 9:23 pm

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post You watched him drive away
Dear Judy Pat, I usually go back and read previous notes from some one before I answer but I am so anxious to talk to you tonight I am not doing that, I will just jump right in and say what I think needs to be said.

It was February or March of last year when my husband became violent and kicking all the furniture in our house thinking it was bad men trying to hurt him and me... no need for me to go into detail, you get the picture... He had to be in the psych unit of our local hosp. The locked down wing. It hurts, I know. When I sat for the interview answering all the questions after he had been admitted, one of the questions was, "Mrs P. Where do you want him to go after we get him on proper medication and he is stable?". I was shocked and answered, "Well home, of course". They gave me a quizzical look and wrote that down. After two weeks the geriactric psychiatrist asked if he could keep him one more week. So at the end of three weeks, he was returned home to me. His medical plan was set, but for home it was too much... he was in a stupor but under the guidance of his doctor, I was able to take him off all medication and add things slowly as symptoms required. It was not easy but that was eighteen months ago and Mr B. is still at home with me. Physically and mentally his condition has deteriorated over that time but he has been with me at home and we have had lots of good days... many not so good, but I have meds to deal with the hard times and I have learned how to adjust, adjust, adjust.

Think positive. Be his advocate. Are your familiar with the dangerous drug, haldol? Be sure to have the doctors follow the Dr Boeve recommended medication. He is going in the hospital for help. Keep us informed.

Hurriedly, probably too hurriedly, I'm sorry,


Fri Aug 28, 2009 10:51 pm

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post And here I am again
S'cuse me. I see in October of last year you were recommending the Dr Boeve plan to your MD who was very receptive so there is no danger of your hubby being given the Haldol to get him to quiet down. That makes me feel better. Now, you just need to relax and let others do the care giving while you wait and rest. Please try.


"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Fri Aug 28, 2009 11:26 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
I am so sorry it has come down to this but this maybe the best in the long run, he couldn't go on the way he was, behavior is such a big thing with LBD and it almost is the one sigle thing that has them placed because most of us Lay people really don't know how to deal with it and then factor in the meds on top of all that and we end up with a mess.
I do hope they can get him under control and he can have some sort of quality of life!
Keep us posted!

Irene Selak

Sat Aug 29, 2009 7:19 am
Profile WWW

Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC

I hope you are able to get some rest. It will help you deal with everything to come. My mother's two weeks in a geriatric psych ward were the worst of my life. She developed delirium that made her semi-comatose. That's not a medical description, just my own. We (her children) thought she'd had a stroke and was dying, and we couldn't understand why the doctors weren't more concerned when she could no longer sit up or swallow.

But my point here is not how bad that was -- but that it got better as soon as she was released and back in a semi-familiar environment (the dementia unit she'd moved into a couple of months before). Whether it was the familiarity or just being able to get more restful sleep or something else, she returned to her normal, though less combative, self once there and on the new med regime.

So, if things seem to get worse for a while, be prepared and know it doesn't mean you made a mistake. You've done the only thing you possibly could, for both of you.


Sat Aug 29, 2009 8:29 am

Joined: Thu Aug 30, 2007 6:15 pm
Posts: 231
Location: Charlotte, NC
My Tony is in a locked dimentia unit and has been for 22 months. You ask if he will let you comfort him there. I think I am MORE of a comfort to him there than I was at home where I was scared to death of his fluctuations. I was not sleeping and felt like I would die before he did. I go every day 3-9 and take care of him, feeding him , bathing him, putting him in bed. But I am not SCARED! When he is at his worse I just hang in there and know that I have help and he cannot harm himself, or me. He has progressed so that he does not get around by himself anymore and has dysphagia and every once in a while I think I can bring him home, then he has a bad week, grabbing me, hallucinating wildly, and I am glad that he is where he is. Hospice is wonderful here. They have sent in dog therapy people, singers, guitar players, etc. They cut his hair and the hospice nurse is there at least twice a week. So for now, he is in the best place for him. I just think I am not strong enough to handle him at home, either emotionally or mentally.

Sat Aug 29, 2009 2:20 pm

Joined: Mon Apr 28, 2008 9:12 pm
Posts: 40
Dear Friends in Lewy
Thanks so much for your words and suggestions. Roy is now in a 16 bed geriactric psychiactric unit. A loving friend drove me there today. She gabbed about mutual teacher gossip all the way there and back to home. So good, or I would have cried all the way to and from. Yes, of course they had given him the wrong meds when he tried to hit people in the ward today. The hospital had not forewarned that zyprexa gave him hallucinations, etc. He was stiff and grabbing imaginary things in the air. To the new hospital's credit, they immediately called the doc and told him "no" on the zyprexa. Also we had an intake interview from a very caring person. But I was so surprised to hear that a lot of the elderly had no family member present for this. My hubby only answered about 20 percent of the questions factually! He looked so sad, so tired and so old.
But the crux of all this is that I had tried to tell his other docs for the past month and a half... that in spite of no discomfort, I felt he had a UTI Sure enough.... he did! The emergency ward doc did not even test for this until I insisted. Can you believe that??? Thank heavens for this site and all of you. It's my dream to get my hubby into the dementia wing of my dad's nursing home They have a lot of love and activities and I would be able to get my dad and my hubby together. Wish me luck. And thanks to all of you!

Sat Aug 29, 2009 7:03 pm
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